I am trying not to get overwhelmed by a great deal of frustration and resentment right now.

Normally, I’m not a big fan of the public airing of dirty laundry. I could thinly fictionalize this, with pseudonyms (well, other than “Nigel” and “Urocyon” 😉 ) and some veneer of objectivity, but I can’t be bothered. It also feels less than honest. Besides hoping to get out some of the frustration, this story falls firmly into the “personal is political” category, and illustrates several faces of intersectionality.

As I’ve mentioned before, I am married to someone I consider at least an AC; he doesn’t think of himself in those terms, but does recognize that we are dealing with a lot of the same challenges. A lot of other people wouldn’t think of Nigel as particularly impaired, either; he comes across as kinda eccentric, but he is good at keeping a decent-paying job (in IT). He has found effective executive function/inertia workarounds to make sure he gets to work on time, and that sort of thing.

BTW, I do feel lucky to have a partner who is a lot better at paid work, and at things like making sure bills are taken care of, so we have far better quality of life in some ways than if I were responsible for doing financial stuff! Even better, one who does not seem to consider me some kind of burden, crazy, etc. In general, the partnership works pretty well, in a complementary way.

I also resent needing to feel lucky about a situation in which I am more dependent than would be the case if things were anything resembling fair.

This breaks down one hell of a lot when Nigel comes home. Suddenly he doesn’t look nearly as “high-functioning” as I do. The executive function and inertia stuff becomes a problem, and he honestly doesn’t see messes. I thought this was some bad excuse at first–especially having dealt with people who really meant “I am too important to bother seeing a mess, much less to be expected to take care of it”–but it really seems to be true. (OTOH, I just can’t stop seeing the mess, and get overwhelmed and bogged down in helplessness and inertia; not the best combo.)

Now, my executive function isn’t any great shakes, to put it pretty mildly, and I’m unfortunately prone to inertia. The big difference that keeps looming up? I have had to learn to work around it and do household stuff anyway, even if that means I have no time, energy, nor mental processing power left to do anything else. I just don’t have the luxury of not seeing messes. As the woman in charge, I am going to get blamed by an awful lot of people if I don’t clean up any messes that exist, no matter who in the house was responsible for them. And no matter what kind of disabilities I’ve got going.

It’s down to expectations. Nigel, not having grown up as Nigella, has not faced the same expectations that household tasks are very important for him to learn to do well. Even being Swedish, with apparently more emphasis on men doing closer to their share, out of fairness. How well this might be working out on the ground is another question, one I haven’t spent enough time in Sweden to venture a guess at. Whatever the reason(s), Nigel is a lot better at talking egalitarianism than at actually walking the walk, when it comes to housework. Even if he is not explicitly thinking “this is women’s work!”.

Nigel can be considered to function well in his life while piling up water bottles in the floor, keeping old unopened moving boxes stacked in the TV room, avoiding hairballs right in the walkway, not noticing that the toilet needs to be cleaned, using a mildewed shower sponge instead of getting a new one, etc. More to the point, he can do this without even seeming impaired to himself, much less anyone else. Nevertheless, without being considered unusually impaired, he is expected to have full-time support staff to take up the slack–which these days is me.

In short, Nigel is not very disabled under the social model, since some of his actual impairments are not even seen as such.

OTOH, I grew up knowing I would be expected to run a household, at some point in time. And guess what, it’s happening now! Not all these expectations were/are in line with those of the dominant culture in the US or the UK (frankly, those had more to do with “matriarch” than “housewife with little decision-making power”, and don’t get me going on how the nuclear family shift has hurt women and disabled people in particular), nor are they all in line with the reality I’m living now. All the cultural versions, however, involve responsibility for making sure people are fed well, clothed appropriately (a ready supply of clean, dry clothes without holes, etc.), and their living conditions are as clean and pleasant as possible. I enjoyed Meloukhia’s recent post about how easy buying and preparing food can be (not), and that’s just one part of the job description.

This is difficult for me, even without the usual added primary responsibility for taking care of children. Lack of support, in a nuclear family setting, is the main reason I am not planning on having any; cats, a dog, and fish occasionally verge on too much for me to handle, even with help.

I don’t know how so many women in this society, even without obvious disablities, manage to meet all the expectations they do. There is just no way I could handle all that I’m doing now along with paid work. The total exhaustion and injury from that was the main reason I couldn’t continue in my only attempt at paid work in better than ten years, a couple of years ago. I made myself very sick trying, and still couldn’t keep up. Now I still fight feeling under extra pressure to go into frenzies around the house, since I am unable to do paid work. Due to disabilities.

Remember that, in Western societies, these household tasks do not constitute Real Work. Hey, anyone with the appropriate plumbing can do it! (Or not, as the case may be. Shhh!) Nigel does Real Work, so the rest is really not important for him. Support needs in this area are dismissed and devalued, especially for disabled women, and it’s no wonder.

What really gripes me, and got me off on this subject today, is continuing to see how ingrained this kind of thing is. I help put myself under extra stress, not seeming able to completely dismiss these expectations. (Other people certainly won’t.) And Nigel does not seem to see just how unfair some of his behavior is.

I’m not nearly so frustrated at Nigel himself, as at the layers of nasty socialization that are contributing to the problem. Our personal conflict is a symptom.

The immediate irritant today? I got out on the patio again, picking up junk, very little of which I put there. (I am responsible for empty plant pots and decrepit garden tools, but that’s about it.) My back and slow-healing nasty ankle sprain are killing me; both were already acting up when I started in, and I knew that was going to hurt. I had to do it anyway.

Months (and even years, with some of it) of “I’ll deal with that later” have been looking more and more like “somebody will eventually take care of it”–where the only other Somebody available hadn’t already done it because of real physical impairments. We have talked about this repeatedly, with my risking sounding like a nag, and he has agreed to do things I have physical trouble doing. Repeatedly. From getting someone in to haul off bigger pieces of junk, to “sure, I’ll scoop up after the dog because I know it hurts you to bend over and do it”. Hell, he frequently tells me not to do things because I’ll hurt myself, but that does not seem to apply to the Invisible Mess.

Then there’s the allergies to dust, mold, dander, etc. Oh my, there’s the allergies and asthma. A dust mask helps while cleaning, but not nearly enough, and I can’t go around wearing one all the time against the built-up allergens. Nigel has a touch of hay fever.

The fairies don’t come and do this stuff. I almost wish they would, even the not-so-warm-and-fuzzy kind.

I am still slightly ashamed to admit this, but we do have a huge mess on the patio. There’s an old microwave and dehumidifier, an old TV, a horrible pile of DIY remnants from when we had to replace damp floorboards and pulled up some yucky old carpet while we were at it, and other stuff. (The inside of the house is not much less squalorous, at this point. And we’re moving before too long!) I have more trouble using the phone to get someone to haul the crap away, and Nigel has put off doing so for years with reminders that it needs done.

Now it’s important, and there’s a deadline. The new upstairs neighbor neither of us has so much as exchanged greetings with so far took it upon himself to call the council and claim there were rats on the patio, to get them to do something. (I’d have seen evidence of rats before now. It’s bad enough without rats.) We have two weeks, ending early next week, to get it cleaned up, or Environmental Health will be called in. And I sure don’t want that.

Update since I wrote this yesterday evening: Nigel got in touch with a rubbish clearance firm (Rubbish Disposal) after he got home yesterday. They actually called him back less than two hours later! They came to give us an estimate this morning, and hauled off the electricals while they were at it. He also got them to take the old washing machine from the kitchen, which the delivery guys who brought the new one weaseled out of hauling away (we’ve yet to get a refund for that). I’m glad to see all of it gone. Yay! They should be coming back for the other junk tomorrow. Now I’m also less immediately irritated at Nigel.

As an added wrinkle, I just about had a heart attack when the council guy showed up at the door. (Not much exaggeration; I had palpitations for hours after he was gone.) I grew up with a hoarder* who kept winding up in court over it**–besides keeping things nigh unlivable–and there was a series of really ugly scenes. A couple of the neighbors really hated all of us, even the ones who had very little to do with the junk; one really unpleasant woman (who moved in knowing there was junk) even kept screaming and cursing at my mom and me from her deck, every time she saw us outside.

This kind of thing will stay with you. Even when this house was clean, I hated for anyone to knock on the door, much less show up unannounced so that I had to invite them in. Our gas and electric meters are inside the house, which makes things even more interesting. Given some other (related) history, I am afraid that the mess could be used as evidence that I cannot take care of myself, or am even a danger to myself. I get anxiety attacks if it looks like someone is taking too much interest in our garden (again, even when it was clean), much less when someone from the council really does show up at the door. I have been having anxiety/PTSD problems at the idea of this happening for some time now–watching the mess accumulate–which leaves me even less able to deal with the situation. The old learned helplessness starts kicking in, even though it hit me hard a couple of years ago that now I do have some control over my environment. It’s proven harder to get past the ingrained reactions of getting overwhelmed and depressed, though.

Neither one of us is a hoarder, but just plain cluttering can have close to the same results. Then I get overwhelmed, depressed, and verging on “paranoid” (based in past experience), and it’s even harder to get things straightened out. Especially since I never really learned how to deal with messes, much less prevent them from accumulating. Right now, it’s not nearly as bad a situation as I grew up in, but I can too easily see it getting there with time. And that really freaks me out.

People who don’t understand how this can happen tend to be really quick to judge, which hardly improves things.

Most of all, I could do with some support from people who understand what this is like. (I’m definitely not alone in having my own squalor problems after growing up with a hoarder!) There’s quite a mix of people on that forum, not surprisingly some others on the Spectrum. One of the best things about it, though, is the pragmatic approach. Yeah, it’s good to understand what’s contributing so that you can keep it from tripping you up in the future, but what’s really important is figuring out what will actually work for you in terms of cleaning up the mess and keeping things cleaned up.

BTW, the stress from the patio situation and knowing we need to get things cleaned up before we move (at some unknown time, since we’re tangled up in visa applications) is one of the main reasons I have not been spending much time online lately, or keeping up with things too well. With any luck, this will let up before too long.

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* My stepdad. He’s also autistic, with executive function and inertia problems, besides being a compulsive hoarder. Unfortunately, these real difficulties made it harder to tell that he was also going beyond that and playing people, because he just didn’t want to do things and really thought he was too good to be bothered. Without clear boundaries, he not only kept appropriating and hoarding other people’s stuff–to the point that I couldn’t keep pens and pencils unless I hid them!–he junked up my bedroom so I couldn’t use it properly (while I was briefly living on campus), and later my grandmother’s house. With the hoarding, he would take the emotional abuse to new levels, and even physically assault people who tried to move his stuff. There were some other things going on in this case, too–if he could take advantage of someone, he felt entitled to do it. Unfortunately, inclined as I was to give him scads of extra benefit of the doubt, knowing how many people had projected bad motives onto me where they didn’t exist–just being autistic doesn’t mean that you don’t also have some other problems. Or even that you can’t turn yourself into a nasty piece of work.

I have since gone No Contact. (Some relatives strongly suggested this!) Yes, he’s 67 and does not take care of his health, and I’m that horrible, selfish kid who neglects him and lets him live in unsafe, squalorous conditions–and feel better for it, in a lot of ways! At last check, he was illegally living in the basement of the house he’d gotten condemned until it was cleaned out and fully fixed after a fire (that started in flammable junk)–and there’s nothing I could do about it if I even felt obligated by now.

Given some of the surface similarities in behavior, I have had trouble not projecting similar motives onto Nigel. Nigel does not seem to have bad motives, and he respects me. Other people around Nigel are not just ghosts, who either give him what he wants or get in his way. I am also trying to work around lingering reluctance to ask him to do things, even once, since he is not prone to passive-aggressive responses and gaslighting. (Such that the whole problem is your being unreasonable, as demonstrated by your asking him to do stuff at all. Much less multiple times, or with anger showing. What further proof of craziness could be required? His having appropriated your car, then damaged it, could not possibly be the problem.) Additionally, nobody else is standing by to back him up in blaming me for any difficult behavior he might show, nor to invalidate and gaslight my own understandable anger and frustration.

** One judge really did not understand what was going on, and sentenced him to community service. At the local landfill. You can probably imagine how that one turned out. *facepalm*

I unfortunately have long been in the situation where I can’t ignore messes, they seriously impair my ability to function, and I can do next to nothing to clean them up.

I remember the year before I got services. Aside from starving, the house was a wreck. I was terrified whenever the landlord came by and made excuses to keep him outside. Because I couldn’t handle being evicted or worse. But no matter how hard I tried I couldn’t do a thing about the mess. My attempts to do that ended the way my attempts to eat regularly ended — I would end up in one of several states (or a combination):

1. Curled in a ball unable to move.
2. My feet would sort of weave me around the house while my perceptual processing shorted out to such a degree that I was functionally blind, deaf, and unable to put two thoughts together
3. Gravity would seem to tilt suddenly sideways and I would hit the floor hard while thinking it was the wall.
4. I would get locked into a couple motions repeated over and over again.

I am glad I have services because the alternative was awful and would have probably eventually ended with me dead, homeless, or institutionalized. And the idea of having the responsibility for cleaning up after someone else sounds like it would involve all the emotions I remember plus guilt at being unable to fulfill my imagined role and unable to help the other person.

I can actually do a bit of picking up but the stars have to align just right and I have to have a mostly clean environment to work in. Well… probably not even a bit now that my body’s trashed but that’s different.

I remember having a discussion with another autie once she learned of how bad it was before services. She told me she could never live like that because she had to have it spotless in order to function, and indeed her apartment was spotless. I tried to explain I needed it clean to function too but it didn’t mean I could keep it that way. She seemed to be under the impression that I just enjoyed or tolerated clutter. And I do neither. I just can’t seem to do anything about it.

Sorry for running on about myself. But I can easily imagine how difficult your situation is if that’s any use.

Now the patio is cleaned up, and I’ve got the resources available to reply. 🙂

I tried to explain I needed it clean to function too but it didn’t mean I could keep it that way. She seemed to be under the impression that I just enjoyed or tolerated clutter. And I do neither. I just can’t seem to do anything about it.

That sounds entirely too familiar.

When there’s clutter, I spend a lot of time wandering around looking at it and getting overwhelmed. That takes a lot of energy I need for other things, much less to figure out how to clean it up! (That includes things like eating regularly, too–lots of sequencing involved there, and that’s at least half the reason I’m so bad at dealing with the clutter.) It also distracts me from what I want to do, or even from being able to figure out what else I could be doing–besides sucking so much energy–so it’s not as if I am just whooping it up while willfully ignoring the mess. I don’t know how that would even make sense. Geez.

I’m still truly amazed by Nigel’s superpower of ignoring clutter. Sometimes I wish I had that one! At least until we got a real rat infestation or something.

Once we manage to move, I am planning to try to make sure there’s just not as much stuff in the house. Even if that means some things (like Nigel’s unopened moving boxes from 2001 or so) go to live in a shed. With any luck, that will (a) be doable, and (b) actually help. The only times I have been able to keep on top of things at all, and function better, have been when there hasn’t been as much physical stuff to manage at all. During my brief experiment at living on campus, I kept my side of the room neat, in part because I didn’t drag a bunch of crap in there to clutter it up. That was the one part of that experience I enjoyed. *shakes head*

It sounds like an excellent thing that you finally got the kind of services you need. I’ve only gotten to the “curled up in a ball” point a few times, but the consequences of not having the services sound really unpleasant. Sounds like the situation was really diverting a lot of resources you needed!

Sorry for running on about myself.

Thanks for sharing some of your experiences with this kind of thing! It’s good (in a way) to see that someone else understands.